I Have Spina Bifida And I Am Beautiful
I used to think God made a mistake when he made me. This is how I realized I was wrong.
I went to a wedding last summer. I was wearing a cute new dress and sweet little flats. I felt pretty. The time between the ceremony and reception was spent eating appetizers and laughing with dear friends, but at one point, I looked over at another group of guests and a woman was staring at my legs — unabashedly, openly, without even blinking. She had a look of utter disgust on her face. I quickly turned away, embarrassed, and looked at my friend with wide eyes.
“Yeah,” she said. “I saw that too. I want to go punch her.”
As a little girl, I was happy; I had wonderful, supportive parents; I couldn’t have asked for a better childhood. But I thought that God made a huge mistake when he made me. Because I grew up in a Christian home and went to Sunday School, I heard that one verse found in Psalm 139, “I praise you, for I am fearfully and wonderfully made…” on a regular basis. I believed that I was some odd exception to that rule, though. Maybe I just slipped through the cracks; surely a loving God wouldn’t have purposely made me like this.
I have Spina Bifida, which means I have missing nerves in my spinal cord. Missing nerves tend to be fairly problematic, to say the least. I have an impressive scar from the spinal surgery I had as an infant that goes from one side of my body to the other. My feet are scrunched up and are two different sizes and my calf muscles are virtually nonexistent. My thighs have to make up for my lack of calves, so they’re muscular, which is an oddly disproportionate combination. If I ever fall on my back, or hit the wrong spot at my Pilates class, it feels like there is electricity shooting up and down my legs, and I’m temporarily paralyzed. I take medication that makes it necessary to stay inside on really hot days to avoid the inevitable heat stroke. I have to wear orthotics in ugly shoes and even with those, my feet and hips still hurt all the time. My body aches when it rains.
Most people with Spina Bifida are in wheelchairs and have significant physical disabilities. The doctors told my parents that I wouldn’t be able to walk, but I can. No one can really explain why most of my issues are hidden, why I can ride a bike and waterski, or why I have this really mild version of a severe disability.
It’s hard to feel fortunate when you deal with something like this, though. As a child I would cry because I was convinced I would never be beautiful enough to be loved by a boy. I did a lot of praying, hoping that one day I would be normal. I knew people couldn’t tell what was wrong with me on the outside, but I believed they wouldn’t like me if they found out the truth.
So I buried my secret as deep as it could go. Then, in grade four, I took a risk and told my best friend what was wrong with me. I told her all of the things that my mother and I had rehearsed. I told her about my spine and my feet and my medication. I told her that it was a blessing I was so short. If I were tall or heavy, my legs wouldn’t hold me and I wouldn’t be able to walk. God blessed me with tininess! I can walk! It’s a miracle! She listened quietly and didn’t ask questions.
A week later at lunchtime, a girl in my class turned around and said, “Hey. We all know you have a growing problem.” “No I don’t! I DON’T!” I yelled at them. My best friend turned to me and said, “Well, that’s what you told me.” They know. They know something is wrong with me, but it’s not even the truth. It’s some weird, twisted contortion of the truth. That isn’t me! I could hear the whispers and I felt my friendships change. They thought I had a growing problem. But NO. It’s a hole-in-the-spine problem. At least get it right!
I buried my secret even deeper. I refused to wear shorts to school so people wouldn’t see my mismatched legs. I always insisted my scrunched up toes be painted in an effort to make them prettier. In our family we used to say that my feet looked like they were in the permanent high heel position, just like Barbie’s feet. In high school, my friend laughed and said they looked like Berenstain Bear feet. High school me chuckled along with her, but I screamed on the inside. They are Barbie feet! Not Berenstain Bear feet!
It’s hard looking in the mirror and not liking what I see. I don’t feel beautiful when my feet are painfully squished into flats that don’t look very chic or stylish. I’m convinced that the ugliness of my lower half completely ruins anything else I’ve got going on. I’m embarrassed when people ask why I’m limping, and the only answer I have for them is “everything just hurts today.” When I’m around tall, leggy girls in sky-high heels, I always feel a little inadequate. It’s hard to look a stranger in the eye when she’s staring at your legs with disgust. My friends and family tell me I’m gorgeous, but it’s a struggle to believe it some days. I have to work up the courage to just to walk in front of people when I’m convinced they will be staring at my legs and wondering why my right foot turns in a little bit.
“Precocious” is a word that was often used to describe me, probably because I’ve always appeared to be significantly younger than I am. When people realized I could articulate myself and I was actually intelligent, they were impressed. And my quick wit always surprised people. In elementary school, when the other kids teased me for being short, I shot back at them with, “Well, you’re ugly and I can grow.” It never failed to catch them off guard. I didn’t play the quiet, meek victim bullies were used to. My humor and wit stopped people in their tracks and turned them into friends.
I want nothing more than for people to stop underestimating me. Just because I am tiny, does not mean I am incapable (except maybe when it comes to reaching the top shelves). Just because I look young, doesn’t mean I am naïve. Just because I have a disability, doesn’t mean I am worth less than anyone else.
In an effort to not be underestimated, I sometimes hide things about myself. I don’t often talk about having a disability openly. I definitely don’t write about it on the internet. I try to avoid situations where it might come in to question. I figure that if people don’t know about my physical differences, they won’t underestimate me. I don’t want to be seen as “the disabled girl,” because I know that’s not what defines me. It’s a deep, integral part of who I am, but it’s not the first thing I want people to know when they meet me. I want them to get to know me for who I am, not for a condition I might have. I have a desire to be deeply and truly known.
I have decided that I’m going to be beautiful.
I’m not going to be the kind of beautiful that is loud and proud and in your face. I am going to be the kind of beautiful that is steady and understated. The beautiful that is gentle and quiet, but strong. It’s not the kind of beauty that turns heads or drops jaws, but the kind that lights up a room. It’s not even the kind of beauty that stands on a mountain and screams curses at our conformity to society’s expectations. It’s less “I am woman, hear me roar,” and more “This is me. And I am quite fine, thank you.” It’s the kind of beautiful that is completely OK with just being what it is.
But I know that kind of beauty isn’t something I can achieve on my own. It’s so much greater than that. It’s based on the knowledge that I have been intricately designed by the same artist who painted the trees and the flowers and the mountains and the oceans and the skies. I am even more breathtakingly beautiful than the physical world because unlike those mere things, I was created in the image of God himself. That concept is too big for me to grasp, and I think I’m OK with it. I’m OK with not knowing why things happen the way they do, with not knowing exactly why I was created the way I was created. I am OK with it because I have faith in a God who tells the sun when to rise and set. I have faith in someone who is astoundingly bigger and greater than myself. I am deeply and truly known by the one who created me.
And I have a relationship with Jesus – someone who flipped everything upside down and caused a lot of ruckus. He declared that the weak are strong. The kingdom of God belongs to the least of these: the broken, the sick, the poor, the lonely. I can’t help but be totally enamored and thrilled by that knowledge.
I am going to be beautiful because I know that I’ve been created lovingly for a purpose. No one is exactly the same as me. No one has been given this same story to tell. No one besides me could be writing these words. While it is sometimes hard to look in the mirror and declare my own beauty, I will do just that because the creator of the universe thinks I’m quite spectacular.
I am kind.
I am sweet.
I am sassy.
I am witty.
I am intelligent.
I am worthy of love.
I am beautiful.
I am fearfully and wonderfully made.
And the next time someone stares at my legs with disgust when I am dolled up for a wedding, I will look them in the eye and say, “They’re pretty great, right?”